1
40
9
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
November 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November List 2023
URL Address
<a href="http://doi.org/10.3390/children10081315" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children10081315</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Telehealth Needs and Concerns of Stakeholders in Pediatric Palliative Home Care
Publisher
An entity responsible for making the resource available
Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Health Services Needs and Demand; Female; Male; Palliative Care; Quality of Health Care; Adult; Telemedicine; Middle Age; Qualitative Studies; Home Health Care; Data Analysis Software; Human; Descriptive Statistics; Pediatric Care; Family Attitudes; Funding Source; Semi-Structured Interview; Patient Attitudes; Quantitative Studies; Pilot Studies; Telehealth
Creator
An entity primarily responsible for making the resource
Zimmermann J; Heilmann ML; Fisch-Jessen M; Hauch H; Kruempelmann S; Moeller H; Nagel L; Nathrath M; Vaillant V; Voelker T; Deckers MJ
Description
An account of the resource
Abstract Pediatric palliative home care (PPHC) provides care for children, adolescents, and young adults with life-limiting illnesses in their own homes. Home care often requires long travel times for the PPHC team, which is available to the families 24/7 during crises. The complementary use of telehealth may improve the quality of care. In this pilot study we identify the needs and concerns of patients, teams, and other stakeholders regarding the introduction of telehealth. As a first step, focus groups were conducted in three teams. For the second step, semi-structured interviews were conducted with patients and their families (n = 15). Both steps were accompanied by quantitative surveys (mixed methods approach). The qualitative data were analyzed using content analysis. A total of 11 needs were identified, which were prioritized differently. Highest priority was given to: data transmission, video consultation, access to patient records, symptom questionnaires, and communication support. The concerns identified were related to the assumption of deterioration of the status quo. Potential causes of deterioration were thought to be the negative impact on patient care, inappropriate user behavior, or a high level of technical requirements. As a conclusion, we define six recommendations for telehealth in PPHC.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3390/children10081315" target="_blank" rel="noreferrer noopener">10.3390/children10081315</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Adult
Children
Data Analysis Software
Deckers MJ
Descriptive Statistics
Family Attitudes
Female
Fisch-Jessen M
Funding Source
Hauch H
Health Services Needs And Demand
Heilmann ML
Home Health Care
Human
Kruempelmann S
Male
Middle Age
Moeller H
Nagel L
Nathrath M
November List 2023
Palliative Care
Patient Attitudes
Pediatric Care
Pilot Studies
Qualitative Studies
Quality Of Health Care
Quantitative Studies
Semi-Structured Interview
Telehealth
Telemedicine
Vaillant V
Voelker T
Zimmermann J
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
September 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September List 2023
URL Address
<a href="http://doi.org/10.12968/bjom.2023.31.7.368%5C"> http://doi.org/10.12968/bjom.2023.31.7.368\</a>"
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Max's legacy: an evaluation of the impacts of baby loss on staff and families
Publisher
An entity responsible for making the resource available
British Journal of Midwifery
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Female; Descriptive Research; Human; Thematic Analysis; Bereavement; Family Attitudes; Semi-Structured Interview; Abortion, Spontaneous; After Care; Attitude of Health Personnel; Focus Groups; Multimethod Studies; Pregnancy Trimester, First; Pregnancy; Safety; United Kingdom
Creator
An entity primarily responsible for making the resource
Whitehouse C; Crane R; Rostron H; Cater K
Description
An account of the resource
Background/Aims There is a paucity of literature on the impact of baby loss experiences on family and staff. This study aimed to explore existing support available to families and staff in a UK hospital for first trimester miscarriage, as well as experiences of baby loss, and make recommendations for future care. Methods A mixed-methods service evaluation was conducted. Data were gathered from healthcare professionals (surveys, phase 1; interviews, phase 2) and service users who had experienced baby loss (focus group discussions, phase 3). Qualitative data were analysed thematically, alongside descriptive quantitative results. Results Communication, support, recognition of loss and environment were key contributors to positive and negative experiences for staff and families. Peer support enhanced communication, reduced isolation and increased ability to function on a daily basis following loss. Conclusions Formal, resourced maternity bereavement aftercare services are essential to the support the experiences, outcomes and safety of staff and families experiencing baby loss and miscarriage.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/bjom.2023.31.7.368%5C">10.12968/bjom.2023.31.7.368\</a>"
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Abortion, Spontaneous
After Care
Attitude Of Health Personnel
Bereavement
British Journal of Midwifery
Cater K
Crane R
Descriptive Research
Family Attitudes
Female
Focus Groups
Human
Multimethod Studies
Pregnancy
Pregnancy Trimester, First
Rostron H
Safety
Semi-Structured Interview
September List 2058
Thematic Analysis
United Kingdom
Whitehouse C
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
September 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September List 2023
URL Address
<a href="http://doi.org/10.1007/s10865-022-00388-1%5C"> http://doi.org/10.1007/s10865-022-00388-1\</a>"
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Sleep quality moderates the association between family bereavement and heart rate variability
Publisher
An entity responsible for making the resource available
Journal of Behavioral Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Bereavement; Sleep; Family; Descriptive Statistics; Human; Death; Questionnaires; Surveys; Bereavement; Cardiovascular Diseases; Comparative Studies; Family Attitudes; Family Relations; Funding Source; Health Behavior; Heart Rate Variability; Insomnia; Psychological Distress; Psychological Well-Being; Psychosocial Factors; Sleep Quality; United States; Vulnerability
Creator
An entity primarily responsible for making the resource
Chai HW; Jester DJ; Lee S; Joo S; Umberson DJ; Almeida DM
Description
An account of the resource
Two separate bodies of literature point to the link between family bereavement and cardiovascular health and between sleep quality and cardiovascular outcomes. However, less is known about the joint influence of family bereavement and sleep quality on cardiovascular functioning. The aims of this study were to examine the relationships between experiencing the death of a family member and heart rate variability (HRV) and to further explore whether these associations differ by sleep quality. Using data from the Midlife in the United States (MIDUS) Biomarker Project, the sample for this study included respondents who experienced the death of an immediate family member - father, mother, spouse, sibling, or child - within a year before the Biomarker project and those who did not experience any deaths (N = 962). We used two measures of HRV and sleep quality was measured using the Pittsburgh Sleep Quality Index. Results showed that experiencing the death of a family member was associated with worse HRV only among those with poor sleep quality and not for those with good sleep quality. These results suggest that poor sleep quality may indicate psychophysiological vulnerability for those who experienced the death of a family member. Interventions to improve sleep quality could be effective in enhancing cardiovascular health of bereaved individuals.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s10865-022-00388-1%5C">10.1007/s10865-022-00388-1\</a>"
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Almeida DM
Bereavement
Cardiovascular Diseases
Chai HW
Comparative Studies
Death
Descriptive Statistics
Family
Family Attitudes
Family Relations
Funding Source
Health Behavior
Heart Rate Variability
Human
insomnia
Jester DJ
Joo S
Journal Of Behavioral Medicine
Lee S
Psychological Distress
Psychological Well-being
Psychosocial Factors
Questionnaires
September List 2031
Sleep
Sleep Quality
surveys
Umberson DJ
United States
VULNERABILITY
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
July 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2021 List
URL Address
<a href="http://doi.org/10.1097/NNR.0000000000000501" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/NNR.0000000000000501</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Using Photo-Elicitation Interviews With Families of Children and Adolescents With Chronic Illness
Publisher
An entity responsible for making the resource available
Nursing Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
adolescent; child; chronic disease; Family Attitudes; pediatrics; photo-elicitation interviews; photography
Creator
An entity primarily responsible for making the resource
Leite ACAB; Garcia-Vivar C; Nascimento LC
Description
An account of the resource
BACKGROUND: Despite the increasing number of studies using photo-elicitation for data collection in qualitative research, there is a need to further explore its use among families of children and adolescents living with chronic illness. OBJECTIVE(S): The aim of this study was to discuss methodological and pragmatic considerations about the use of photo-elicitation interviews (PEIs) for data collection with families of children and adolescents living with chronic illness. METHOD(S): We discussed methodological aspects of using PEIs as reported in publications. A search of the literature was carried out to identify articles presenting information on methodological aspects of the use of PEIs in qualitative data collection, regardless of age group. In pursuit of complementing the evidence with pragmatic considerations of using PEIs, we illustrate with an example of a recent qualitative study of our own that aimed to understand the narratives about hope of families of children and adolescents living with chronic illness. RESULT(S): We synthesized common aspects that need to be considered when using PEIs with different populations: ethical issues, cameras, guidance, and interviews. We also presented our experience of using the PEI technique to collect data from families. Because of our experience, we denominate our method as the "family photo-elicitation interview" (FPEI). Our method goes beyond the PEI technique because it integrates aspects of family nursing theories when conducting interviews with families. FPEIs strengthen family interaction and allow family members to share their perspectives. DISCUSSION: We present a new perspective of PEIs-the FPEI-in the pediatric context. Previous studies have not addressed considerations about using PEIs for families. We hope our results assist novice researchers in planning and implementing FPEIs in qualitative research. We recommend that researchers explore the use of FPEIs in other contexts, such as geriatrics or palliative care. Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/NNR.0000000000000501" target="_blank" rel="noreferrer noopener">10.1097/NNR.0000000000000501</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Adolescent
Child
Chronic Disease
Family Attitudes
Garcia-Vivar C
July 2021 List
Leite ACAB
Nascimento LC
Nursing Research
Pediatrics
photo-elicitation interviews
Photography
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
July 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2021 List
URL Address
<a href="http://doi.org/10.9778/cmajo.20200212" target="_blank" rel="noreferrer noopener">http://doi.org/10.9778/cmajo.20200212</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Family attitudes about and experiences with medical cannabis in children with cancer or epilepsy: an exploratory qualitative study
Publisher
An entity responsible for making the resource available
CMAJ Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Epilepsy; Family Attitudes; medical cannabis; oncology; pain management; parent experiences; pediatric palliative care
Creator
An entity primarily responsible for making the resource
Gibbard M; Mount D; Rassekh SR; Siden H
Description
An account of the resource
BACKGROUND: Cannabis is legal for recreational and medical use in Canada. Our aim was to explore family experiences using medical cannabis for children with severe conditions in the context of legalization. METHODS: We conducted a qualitative study using semistructured interviews between April and July 2019. Participants were parents of children attending BC Children's Hospital oncology or palliative care clinics, recruited through posters, emails or referral. Participants were included if they spoke English and their child used any type of cannabis for medical purposes. Interviews included open-ended questions about the child's cannabis use. Interviews were recorded and transcribed, and thematic analysis was performed using qualitative description. RESULTS: Ten interviews were completed with 9 mothers and 1 mother-father pair. The age range of the children was 22 months to 16 years. The primary reasons for cannabis use were epilepsy (6 children) or chemotherapy management (4 children). Five major themes were identified. 1) Child and family context, and cannabis as a last resort: children were seen as severely ill; parents sought cannabis out of desperation and responsibility to their child. 2) Varied information sources informed decision-making: parents lacked resources from health care providers and sought support from social media, industry and other families. 3) Cannabis as an ambiguous medicine: cannabis was viewed as both a serious drug that doctors should prescribe and as a natural alternative health product, safe to pursue alone. 4) Perceived effects: parents perceived medical benefits with few concerns about adverse effects. 5) Legal and financial challenges: parents were willing to obtain cannabis despite high costs and uncertain legality. INTERPRETATION: Parents of children with severe conditions pursued medical cannabis despite obstacles and needed unbiased information to access alone. Scientific investigation is needed to develop pediatric medical guidelines to inform decisions.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.9778/cmajo.20200212" target="_blank" rel="noreferrer noopener">10.9778/cmajo.20200212</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Cmaj Open
Epilepsy
Family Attitudes
Gibbard M
July 2021 List
medical cannabis
Medicinal Cannabis
Mount D
Oncology
Pain Management
Parent Experiences
Pediatric Palliative Care
Rassekh SR
Siden H
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
April 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2020 List
URL Address
<a href="http://doi.org/10.1007/s10943-020-00991-z" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s10943-020-00991-z</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
“Give them the door but don’t push them through it”: Family Attitudes Toward Physician-Led Spiritual Care in Pediatric Palliative Medicine
Publisher
An entity responsible for making the resource available
Journal of Religion and Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Family Attitudes; palliative care; pediatric; pediatric palliative care; pediatric palliative medicine; physicians; qualitative; religious care; spiritual care
Creator
An entity primarily responsible for making the resource
McNamara L C; Okoniewski W; Maurer S H; Moehling K; Hall D E; Schenker Y
Description
An account of the resource
Little is known about pediatric caregivers’ perceptions of religious or spiritual (R/S) care provided by physicians. We conducted a qualitative, semistructured interview study to understand perceptions of pediatric caregivers toward physician-led R/S care. Participants were 20 primary caregivers whose children were hospitalized and receiving palliative care services. Interviews were audio recorded, transcribed verbatim, and analyzed using constant comparative methods. Three recurrent themes emerged regarding physician-led R/S care: (1) Most caregivers view providing R/S care as a positive sign of physician empathy, while a minority (3/20) prefer to keep R/S and medical care separate, (2) many caregivers prefer R/S care from a physician with whom they have a close relationship and/or share a faith background, and (3) physicians should open the door, but allow families to lead conversations about R/S care. Caregivers have mixed perceptions on physicians engaging in R/S care; most prefer that families set the direction of R/S care for themselves and their loved ones. Physicians should be trained to evaluate families’ spiritual backgrounds and needs in ways that respectfully open the door to these conversations.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s10943-020-00991-z" target="_blank" rel="noreferrer noopener">10.1007/s10943-020-00991-z</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
April 2020 List
Family Attitudes
Hall D E
Journal Of Religion And Health
Maurer S H
McNamara L C
Moehling K
Okoniewski W
Palliative Care
Pediatric
Pediatric Palliative Care
pediatric palliative medicine
Physicians
Qualitative
religious care
Schenker Y
Spiritual Care
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
April 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2020 List
URL Address
<a href="https://jim.bmj.com/content/68/1/91" target="_blank" rel="noreferrer noopener">https://jim.bmj.com/content/68/1/91</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Family attitudes toward genomic sequencing in children with cardiac disease
Publisher
An entity responsible for making the resource available
Journal of Investigative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
child; conference abstract; confidentiality; consumer; controlled study; Family Attitudes; family planning; genetic discrimination; grounded theory; health care system; heart center; Heart Diseases -- Mortality; human; human tissue; insurance; interrater reliability; perception; privacy; prognosis; resource allocation; semi structured interview; sequence analysis; surgery; transplantation; trust; uncertainty
Creator
An entity primarily responsible for making the resource
Gal D; Deuitch N; Tang R; Magnus D; Char D
Description
An account of the resource
Purpose of study Care for children with cardiac disease often involves difficult decisions and clinical uncertainty. Genomic Sequencing (GS) promises to improve clinical prognostics and could impact how difficult decisions are made. We sought to determine how GS results might alter family attitudes towards bedside care choices. Methods used We conducted semi-structured interviews of 35 families at a high-volume pediatric heart center. We discussed previous experience with and understanding of GS, perceptions toward GS in real and hypothetical scenarios, and support needed for implementing GS in clinical care. Responses were analyzed using grounded theory and a codebook was developed. Researchers discussed interpretation of codes and identified and described emerging themes. Interrater reliability was 0.91. Summary of results Three themes emerged: 1) Is knowledge beneficial? Families saw benefits in GS-the ability to provide specific and/or earlier diagnoses, clarify prognosis, change family planning, and avoid unnecessary/additional testing-but also struggled with the sense that GS results did not translate into meaningful changes in clinical care. 2) Should GS guide life limiting decisions and resource allocation? Some parents felt using GS to justify withdrawal of care or allocation of scarce resources (like organs for transplantation) could represent genetic discrimination; other parents felt GS should be used when allocating resources, even if it meant limitation of treatment options for their child. 3) Is giving GS results to the healthcare system safe? All families indicated mistrust of at least one facet of the medical system including insurance companies, maintenance of confidentiality, and the incentive structure in healthcare. Some also expressed distrust of direct to consumer GS testing. Conclusions In families of children with cardiac disease, trust is lacking in perceptions of the clinical utility of GS results, in using GS results to inform difficult decisions and in clinical protections for privacy or handling of GS results. Further efforts to improve the trustworthiness of clinical GS are needed to engage family support in implementation of GS to clinical care.
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
April 2020 List
Char D
Child
conference abstract
Confidentiality
consumer
Controlled Study
Deuitch N
Family Attitudes
family planning
Gal D
genetic discrimination
Grounded Theory
Health Care System
heart center
Heart Diseases -- Mortality
Human
Human Tissue
Insurance
interrater reliability
Journal Of Investigative Medicine
Magnus D
Perception
Privacy
Prognosis
Resource Allocation
Semi Structured Interview
sequence analysis
Surgery
Tang R
Transplantation
Trust
Uncertainty
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
October 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September 2018 List
URL Address
<a href="http://doi.org/10.1186/s12904-018-0347-8" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1186/s12904-018-0347-8</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
A qualitative study of health care professionals’ views and experiences of paediatric advance care planning
Publisher
An entity responsible for making the resource available
BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Adolescence; Advance Care Planning; Attitude of Health Personnel; Child; Community -- England; Conversation; Death; Documentation; England; Family Attitudes; Hospices -- England; Hospital; Hospitals; Human; Infant; Medical Staff; Multidisciplinary Care Team; Newborn; Palliative Care; Pediatric Care -- Psychosocial Factors; Preschool; Qualitative Studies; Semi-Structured Interview; Terminal Care; Thematic Analysis; Time Factors
Creator
An entity primarily responsible for making the resource
Jack BA; Mitchell TK; O'Brien MR; Silverio SA; Knighting K
Description
An account of the resource
Background Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health care professionals, focusing on exploring what their future wishes are; and the development of an advance care plan document. However, in paediatric and neonatal settings, there has been little research to demonstrate how advance care planning conversations take place. This study explored health care professionals’ views and experiences of paediatric advance care planning in hospitals, community settings and hospices. Methods A qualitative methodology was employed using purposive sampling of health care professionals involved in the end-of-life care for children aged 0–18 years known to the hospital palliative care team, and had died at least three months before, but less than 18 months prior to the study. Ethics committee approval was obtained for the study. Located in the North of England, the study involved three hospitals, a children’s hospice, and community services. Data were collected using semi-structured, digitally recorded, telephone interviews. All interviews were transcribed verbatim and subjected to thematic analysis. Results Twenty-one health care professionals participated, including generalist paediatric staff as well as specialist palliative care staff. Two themes were generated from the study: The timing of planning conversations, including waiting for the relationship with the family to form; the introduction of parallel planning; avoiding a crisis situation. Secondly, supporting effective conversations around advance care planning, including where to have the conversation; introducing the conversation; and how to approach the topic encompassing the value of advance care planning and documentation for families. Conclusion The timing of when to start the advance care planning conversations remains an issue for health care professionals. The value of doing it in stages and considering the environment where the conversations are held was noted. Timely planning was seen as vital to avoid difficult conversations at a crisis point and for co-ordination of care. Good advance care planning is to provide the best person-centred care for the child and experience for the family.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-018-0347-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0347-8</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
Adolescence
Advance Care Planning
Attitude Of Health Personnel
BMC Palliative Care
Child
Community -- England
Conversation
Death
Documentation
England
Family Attitudes
Hospices -- England
Hospital
Hospitals
Human
Infant
Jack BA
Knighting K
Medical Staff
Mitchell TK
Multidisciplinary Care Team
Newborn
O'Brien MR
Palliative Care
Pediatric Care -- Psychosocial Factors
Preschool
Qualitative Studies
Semi-Structured Interview
September 2018 List
Silverio SA
Terminal Care
Thematic Analysis
Time Factors
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
July 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2018 List
URL Address
<a href="http://doi.org/10.1080/15325024.2018.1446271" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/15325024.2018.1446271</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Child’s Play: The Role of Play in Mitigating the Fear of Death Among Pediatric Palliative Care Team Patients, Families, and Caregivers
Publisher
An entity responsible for making the resource available
Journal of Loss & Trauma
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Creator
An entity primarily responsible for making the resource
Crane JL; Davis CS
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/15325024.2018.1446271" target="_blank" rel="noreferrer noopener">10.1080/15325024.2018.1446271</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Description
An account of the resource
Terror Management Theory (TMT), derived from Ernest Becker’s The Denial of Death (1974), maintains that humans are motivated by the desire to overcome our fear of death by constructing meaning and significance in our lives in various ways, including making light of our mortality. In this paper, we examine the role of play as seriously ill children involved with a hospital-based palliative care team live out what may be the remainder of their lives. We question the function that play has, if any, in mitigating the fear of death among dying children and their caregivers. We explore formal and informal manners of therapeutic play among children and adults occurring in moments of terrible stress, pain, and the looming threat of death. We draw on playful representations of death from popular culture and from extended field research conducted with a pediatric palliative care team in a large regional children’s hospital caring for seriously ill children and their families, as patients, families, and caretakers struggle to make sense of their suffering, fear and loss.
2018
Attitude To Death
Caregivers -- Psychosocial Factors
Child
Crane JL
Critically Ill Patients -- Psychosocial Factors -- In Infancy and
Davis CS
Family Attitudes
Fear
Human
Journal of Loss & Trauma
July 2018 List
Pain
Palliative Care -- In Infancy and Childhood
Role Playing